The fifth episode of the interview with Francesca Sofia about Rosaria´s experience with the creation of the Italian Registry and the European Registry for Alternating Hemiplegia.
The Register for a Rare Disease, as a valuable tool to support the research until the final development of an effective treatment, is by its very nature a long-term investment and requires considerable planning and management skills for the patients associations that want to have an active role in this process.
"Acquisire uno spirito più "imprenditoriale" è un passaggio difficile ma cruciale per le associazioni che vogliono fare la differenza nello sviluppo della ricerca sulla propria malattia". Rosaria Vavassori
Posted by Science Compass on 8. maí 2017